Christine on the difficulty in finding a celebrity spokesperson to stand up for RA and JIA.
I spent part of the long holiday weekend talking with friends about advocacy. We are all advocates, but for different diseases. They have far more “popular” diseases than I do. Popular just doesn’t seem like the right word when talking about serious diseases. But then I have heard the word “sexy” used with Cancer. What in the world can make Cancer sexy? Nothing, right? But when it comes to media attention, the media has deemed Cancer sexy because of the huge celebrity support. I attended Stand Up For Cancer, the TV special that is broadcasted on every network, all over the world. One by one the biggest celebrities came forward and told either their personal stories about dealing with Cancer or the story of a loved one. TV personalities, movie personalities, all of Hollywood were speaking up. And what does that do? It raises millions of dollars for research and support for Cancer patients. It creates awareness. Everyone knows what Cancer is. Everyone. It doesn’t make Cancer sexy to anyone who has experienced it nor has a loved one who experienced it. It makes Cancer sexy to the media because of the celebrity support.
Google Celebrity Advocates for Disease and you will see name after name, disease after disease. Muhammad Ali and Michael J. Fox for Parkinson’s. Ronald Regan and most recently Glen Campbell for Alzheimer’s, Elton John for AIDs and Angelina Jolie for Breast Cancer.
I consider this a wonderful use of celebrity. Helping others in one of the most important ways, with serious health issues. Generating money and awareness for research, for that word we all want to hear….a cure.
When I wrote my latest book Take Me Home From The Oscars I came out of hiding my Rheumatoid Arthritis with this memoir juxtaposing my glamorous life in TV and my life at UCLA dealing with my disease. I had to hide to keep my job as a television fashion and style reporter because of the stigma surrounding Arthritis. The average person still associates it with being old and crippled. Then I found out about the 300,000 children that have RA and I was shocked. How do these kids cope? How do their families cope? How can they take the same strong medicines that I take, the medicines that don’t have a long track record yet?
And that’s when I became an advocate for both Rheumatoid Arthritis and Juvenile Arthritis. I believed because I had done thousands of make overs on TV and had media connections that it would be easy. I could get a major celebrity to come out, talk about this serious autoimmune disease and change the stigma. I was so naïve I didn’t even think it would take long. I would make people understand the different kinds of Arthritis, the severity of the disease, the battle the JA Kids live every day.
Two years later I am no longer naïve. I have learned that this is going to be a much tougher fight than I ever imagined. My good friends in the media supported me with stories about my book and my disease. My media experience got me on some new, big shows to talk about the disease. Then I approached some celebrities, it was time to take it to another level. Some were very interested and willing until their agents or managers got to them and said, “You can’t talk about arthritis, it will hurt your career.” And one by one, the discussions ended.
There has to be our Angelina Jolie, our Michael J. Fox, or our Elton John out there. They don’t have to have the disease; they just have to talk about it. And once that happens with a major celebrity, it will happen with more and more. Yes, we have some sports figures who are currently doing commercials, but a commercial is not the same as a segment on a talk show, a story in People Magazine, or a national press release.
I will never give up. When you see Christine’s Kids on Facebook and read their stories, you know it’s only a matter of time. I keep approaching Oprah and Ellen, one of these days they will respond, I just believe it. In the meantime, I will keep writing, talking, posting, and tweeting. I have worked in front of TV cameras for 25 years. I like TV cameras, I love live TV, but I will like it even better when it’s creating more awareness. I will love it when the public understands that Rheumatoid Arthritis affects every bone and organ in one’s body. When the public understands that babies can’t crawl at 6 months old, toddlers can’t walk easily, eight year olds often can’t participate in school sports, teenagers can’t dance or cheerlead. Yes, I will love it when that day comes because the stigma will be gone. And while Arthritis will never be “sexy” in my mind, it will be understood in the minds of the public.
Yes, that will be a great day.